Caregivers at risk

Summarized by Robert W. Griffith, MD
July 21, 2000 (Reviewed: December 11, 2002)

Introduction

Most people would agree that caring for an elderly person with disabilities is a stressful occupation and can often result in caregiver burnout. This may be expressed in physical or psychiatric illness. Most caregivers are middle-aged adult children and older spouses, caring for a parent or spouse who has limited activities of living. These family caregivers perform an important service for society, but it can be at considerable cost to themselves. For the first time, a formal study has been made of the role of caregiving as a risk factor for mortality - in other words, examining what has long been suspected, using a scientific approach.

Method

The Caregiver Health Effects Study (CHES) studied the mortality of 392 spousal caregivers and 427 noncaregiver controls over a 4 year-period. Four US communities (in North Carolina, Maryland, California, and Pennsylvania) supplied participants who were identified from Medicare listings. A "caregiver" was defined as someone whose spouse had difficultly with at least one activity of daily living or an instrumental activity of daily living, due to physical or health problems or mental confusion. The noncaregiving group comprised individuals whose spouses did not have any such difficulties.

Demographic and health data were collected at the time that caregiver status was assessed. The participants were classified according to their physical health status into (a) those with at least one of six prevalent diseases, (b) those with a subclinical disease indicator, or (c) those with no prevalent or subclinical disease. They were also asked to answer the question "how much of a mental or emotional strain is it on you to either provide the help directly, or to arrange for help to be provided for this activity?" Responses were divided into "no strain", "some strain", and "a lot of strain". These categorizations led to the participants being divided into 3 baseline caregiving status groups: (1) those not helping a disabled spouse, (2) those helping a disabled spouse but not having caregiving strain, and (3) those helping a disabled spouse but having caregiving strain.

The study participants were followed out for an average of 4.5 years (range 3.4 - 5.5 years). Records of death were obtained by reviews of obituaries, medical records, death certificates and Medicare data. This approach led to 100% follow-up ascertainment of death. Cox regression models were used to assess the effects of caregiving status and other covariates on mortality. Relative risk (RR) ratios, adjusted for demographic data, prevalent disease, and subclinical cardiovascular disease, were established, along with their 95% confidence intervals (CI).

Results

The participants ranged in age from 66 to 96 years at baseline, with a mean age of 79.6 years. Fifty-one percent were women. Of those with spouses requiring help, 81% were providing care, and 56% of these reported having caregiver strain. Just over 27% had at least one prevalent disease present at baseline, and an additional 41% had at least one subclinical disease indicator detected. The distribution of prevalent and subclinical disease across the caregiving groups was roughly equal, but it was higher in those with a disabled spouse who were not providing care.

After four years of follow-up, 103 deaths (12.6%) had occurred in the total sample. Results of the adjusted RR (with control subjects - i.e. no spousal disability - as reference) are given in the table below:

	Adjusted RR	95% CI
Not helping a disabled spouse	1.37	0.73 - 2.58
Helping a disabled spouse - no caregiving strain	1.08	0.61 - 1.90
Helping a disabled spouse - caregiving strain	1.63	1.00 - 2.65

It can be seen that the participants who were providing care and experiencing caregiver strain had a mortality risk that was significantly higher than those whose spouses were not disabled (p<0.05). Caregivers who were not experiencing strain and those with a disabled spouse who were not providing care did not have significantly elevated mortality rates.

Comment

The results of this study show that experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. It is quite probable that similar results would be obtained in a study of caregivers looking after a disabled parent, but a longer follow-up period would be required, due to the younger age of such caregivers.

The consequences of these findings are obvious. As we have expressed elsewhere, it is possible for physicians, and indeed for all health care professionals, to do much to reduce the strain placed as a burden on the caregiver. Sometimes the distress is not always recognized (see How to Spot Caregiver Burnout); however, the health professional is probably in the best position to identify it and take the appropriate mitigating action. They can also refer to a useful site on the Internet that specifically addresses the problem of providing Help for Caregivers.

Source

• Caregiving as a risk factor for mortality R. Schulz, SR. Beach, The Caregiver Health Effects Study. JAMA, 1999, vol. 282, pp. 2215--2219

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